“His” Heart, My Life, My Story

I wrote this account of my life since receiving a heart transplant in hopes that others will benefit from my experiences. Most of you who will have transplants will have a far easier time of it than I did. You must remember that I was 68 years old when I had mine and that alone can make a huge difference in recovery time and other factors as well. If any of you have any questions after reading this please contact me personally at bob@baronson.org.

Being a transplant recipient is an amazing experience. I simply cannot describe what the feeling is like knowing that one of the parts you were born has been discarded and replaced with one belonging to someone else who in all likelihood died…except for the organ that is keeping you alive.

I don’t know who my donor was. I only know he was about 30 years old when he died and he was from South Carolina. I have written to my donor family but not heard from them so I assume they prefer to remain anonymous and I understand and accept that.

Everyone who has ever had a transplant has had a unique experience that nothing else in life can match. Each day I am struck by the awareness that the heart I was born with, that kept me alive for 68 years no longer beats within my chest. It died. I didn’t. Wow!

Often when I lie in bed I feel the rhythmic thumping that kept someone else alive for 30 years is now doing the same for me. “His” heart is my life. “His” heart pumps my blood, in my body to my brain and allows me to think, to live, love and enjoy life. “His” heart, not mine.

My donor has given me a lot but his greatest gift is allowing me the extra time to be with my wonderful wife Robin.

In 1995 after collapsing in a parking ramp am rushed to a hospital, I was diagnosed with dilated idiopathic cardiomyopathy and was told that someday I might need a heart transplant. As the owner of a communications consulting business I was very active and travelled a great deal both domestically and internationally, but slowly my health began to deteriorate. Always the optimist I adjusted and slowed down a little but not so anyone would really notice.

Then in 1996 my wife was diagnosed with lung cancer and I ignored my condition while we dealt with hers which included many chemotherapy and radiation sessions. After a long and courageous battle with that terrible disease she succumbed in November of 1998. We had been married for 35 years. It was a devastating time and at age 59 I felt lost, alone and without hope as I began to feel the effects of my own condition.

About a year later I met Robin Diffie and as we got to know each other I felt my life just might come back together after all, but my version of the sword of Damocles, cardiomyopathy, continued its swing through my life as my heart function continued to fall with a resultant decrease in my ability to function.

In 2000 Robin and I were married in Eagan, Minnesota but by then the condition which would later require a heart transplant was becoming debilitating, when I travelled I began to ask for wheelchair service in airports and Robin began traveling with me to make sure I got one and to act as my “pusher.”

Cardiomyopathy kind of sneaks up on you and kicks your butt softly at first but then harder and harder. The effect of the disease is measured by ones “Ejection Fraction” (EF). A normal heart will pump out about 60% of the blood it contains every time it beats. As the disease progresses the EF keeps going down and the heart enlarges in order to store the blood that doesn’t’ get ejected. My heart was getting very large and by 2006 my EF was around 10% and decreasing. Clearly I was dying and too sick to work. Sometimes I could barely walk a few feet without having to stop to rest. My heart was just barely pumping enough blood to keep me alive. Reluctantly I made the decision to retire.

It was then that we decided to move to Jacksonville, Florida and we did so for two reasons. 1) Moving there offered the greatest likelihood of getting a heart. My research indicated that the Mayo Clinic in Jacksonville had a wonderful record in organ procurement and transplantation. 2) It was an easy decision because Jacksonville is Robin’s home town and her entire family is there. I still question Robin’s sanity in marrying a dying man but no matter I am grateful for whatever bug struck her and caused the instability.

After undergoing the battery of tests that are required to qualify for a transplant, I was finally approved and placed on the national list on August 8th of 2007. I had resigned myself to either a very long wait or, I thought, no heart at all because of my age. It had already been twelve very long years since I was diagnosed with a fatal heart disease. I thought that at age 68 it was unlikely that I would get a heart and if I did it wouldn’t be anytime soon — but I got lucky.

Only 13 days after being listed I got the call from Mayo Clinic Transplant Cardiologist Dr. Jeffrey Hosenpud that he “might” have a heart for me. He did. I got one and August 21st 2007 goes down in history as my “other” birthday.

My recovery from the transplant was difficult to say the least. It took four years before I finally felt good again. I quit smoking in 1991 but the 37 year habit had already taken its toll, I had Chronic Obstructive Pulmonary Disease (COPD). That’s a disease of the lungs that can best be described as feeling as though you are breathing through a straw…try that some time. COPD is bad enough but when you get pneumonia on top of it you have another life threatening situation. Well, I got pneumonia shortly after my surgery and was hospitalized again but the recovery was very slow and touch and go before I slowly regained my strength. I now know that another bout with pneumonia could kill me so I try to be pretty careful about what I expose myself to.

I no sooner recovered from the pneumonia virus than I was stricken with indescribable absolutely excruciating pain….pain so severe that sometimes I would just sit and cry. Part of the pain, I’m told, was the result of the way I was positioned during my surgery. Apparently your left arm is in a strange position in order to allow the surgeon unobstructed access to the chest cavity, but a transplant takes a long time and it seems that my arm needed different medical attention than was delivered.

The pain in my left arm right down to my wrist and fingers was awful but then just when I thought it couldn’t get worse, it did. The pain spread to both shoulders, my neck and lower back for and went on for months. Torn rotator cuffs were part of the reason but much of the pain came from unknown causes, perhaps it was the way I was sleeping or maybe the lack of proper exercise and maybe because of an old auto accident. We’ll never know the exact cause but it was finally resolved with a combination of physical therapy and Oxycontin the potent, addictive pain killer, and addictive it was.

I’ve been a recovering alcoholic since 1982. I understand addiction and I understood quite well that I had become dependent on the narcotic. I no longer really needed it for the pain for which it was prescribed, I needed it for the pain caused by the withdrawal you experience between “hits.” When you are taking pain killers there’s a simple question you must ask yourself every time you reach for a pill. “Am I taking this because I need it for pain or am I taking it because I want it?” If you are truthful with yourself and the answer is the latter, you have a problem. I had a problem. By addict standards I wasn’t taking much Oxycontin, only about 30-40 milligrams a day, but it was enough for me to know I needed the drug, needed it not to get high…I needed it to feel normal. That’s what happens to every drunk and junkie…they ultimately drink, shoot or take pills just to try to feel normal. Often the first high you have, is the last one.

Having been through chemical dependency treatment in 1982 I knew what I had to do but I also knew I couldn’t do it cold turkey. I found a highly reputable pain clinic that specialized in addiction and started going there. They immediately took me off of Oxycontin and put me on Suboxone another addictive drug but one that is used to slowly help people through the painful withdrawal that comes with quitting. It took several months but it worked and I was Oxycontin free but, sorry, the story doesn’t end there.

You’d think that after having survived cardiomyopathy, getting a heart transplant, beating terrible pain and withdrawing from an addictive drug I would finally feel better. Unfortunately the light at the end of my tunnel was an oncoming train that hit me hard and almost had me down for the count because for no explainable reason I fell into a deep, dark depression that lasted for a couple of years.

Each day I would awaken, head to my favorite recliner in a corner of the den and sit there in the dark drinking coffee and watching TV. I was nearly a zombie. Some days I wouldn’t even shower and I didn’t want to see or talk to anyone. That was my life day after day, week after week for a couple of years. Depression is one of those diseases where you don’t know how bad off you are until you are no longer bad off. The only thing that gave me any hope each day was maintaining my presence on the Facebook group I started, Organ Transplant Initiative and my blog on WordPress, Bob’s Newheart. While I knew I needed professional help I was so depressed I didn’t’ care if I got it so I kept putting it off. Finally with Robin’s gentle prodding I went back to Mayo and began treatment but you don’t beat depression overnight or even in a few months. Sometimes it takes a considerable amount of trial and error before the right treatment is found. That came right around my four year post surgery mark but not until i had lost 75 pounds from lack of appetite. i was left weak but finally energized and optimistic again.

Through all of that Robin, the lunatic who married a dying man, was steady as a rock. She had her hands full running two businesses and our home plus being my caregiver. I’ll never know how she did it and kept her wits about her but she never flinched. She is the most amazing, compassionate and competent human being I have ever encountered. She is an unflappable optimist who doesn’t have a selfish bone in her body. I don’t know why I was so blessed to find this woman but as the man said, “Somebody up there likes me.”

That takes us to today…five plus years later and I feel wonderful but most importantly I get to spend time with Robin. If a physician could have written a prescription for love, happiness and contentment it would simply have said, “Robin.” It is only because of my donor that I am getting to spend time with this wonderful, gracious, smart, talented, funny and super woman. The heart of a stranger has allowed us to really get to know each other. There is no greater gift my donor could have given me and yes, that’s selfish but in this case I think selfish is OK.

Like many recipients my life has changed in other ways as well. Because of a transplant I’m a different person. I hope I’m a better person. I know I appreciate life a great deal more than I ever did before, but it is not only my life I appreciate, it is everyone’s life. When you experience death or near death, “life” takes on a whole new meaning. My reaction to being a transplant recipient is that I owe my donor big time. While I can’t do anything for him directly I can honor his memory by doing everything in my power to help others live. That’s why I am such an outspoken donation/transplantation activist.

While science generally rejects the notion, some recipients feel they have taken on some of the characteristics of their donor. I can’t say what my donor’s characteristics were because I didn’t know him but my life has changed as a result of having his heart. He may well be the influence behind some of the changes I have experienced which include:

I am much less selfish than I was before and spend as much time as I can trying to help others.

I am much less concerned with material things than I used to be. “Appearances” aren’t important anymore. I don’t have to have a new car, wear the best clothes or get recognition. I simply don’t care about those things.

I am far more passionate about causes I believe in like fairness, equality and justice. I particularly feel a need to help the economically disadvantaged, the disabled, the sick, the elderly and, of course — children who suffer so many indignities of which they should not even be aware, never mind being forced to experience them.

I am more of a peacemaker. In the past I was a warrior, a bulldozer who when advocating for a cause would show my commitment by rolling over those who disagreed and sometimes belittling them in the process. Now I believe in finding common ground and forming friendships despite serious disagreements.

I am much less self-centered than I used to be. I have come to accept who I am and as a result can concentrate on the needs of others.

I have always enjoyed learning but it has almost become an obsession since my transplant. My thirst for knowledge about a wide variety of things knows no bounds. I can’t get enough information about the wonders around us like the sun and the stars and the miracles, medical and otherwise that we experience every day.

Working with my hands has always been enjoyable for me but since my transplant I have become addicted to woodwork. I’m not the Michelangelo of woodworking, hell I’m not even a Barney Fife but I am determined to get better at it. Unfortunately it is my friends and family who must suffer receiving my woodworking “gifts” and then acting as though they like them.

Being a transplant recipient is an amazing experience. It is one of which I am always aware and I mean always that I have someone else’ heart. There is no time in my waking hours that I am not aware that I am alive because a generous stranger give me his heart. I owe him and his family more than I could ever repay no matter what efforts I make for the rest of my life.

If you, the reader, are an organ donor, let me thank you on behalf of the unknown lives you may save as a result of your selfless action. If you are not an organ donor, please consider it carefully. You can save or enhance the lives of up to 60 people just by signing up and you can do that so easily. Just go to www.donatelife.net and follow the directions. Then, tell your family what you’ve done so there is no chance that anyone will object when the time comes to fulfill your commitment.

Earlier in this story I mentioned my Facebook Group and Blog. Let me take just a moment to explain how they came to be. Just a couple of months after my transplant I got a call from Mayo asking if I’d be interested in starting a Facebook Organ donation group and in writing a blog. I knew what neither were but decided I needed something to do during my recuperation and said, “Yes.” With Mayo’s help I got started immediately.

That was the beginning or Facebook’s Organ Transplant Initiative group (OTI) and Bob’s Newheart blog on WordPress www.bobsnewheart.wordpress.com . OTI now has almost 2,500 members and I’ve posted 140 blogs on donation/transplantation issues that have been read by over 100,000 people in at least 20 countries. I believe that I was given my new heart to do this and it has become my new passion.

None of this would be possible without all you wonderful people who helped to make OTI a success and who read my “Stuff” on WordPress. By offering your kind words, thoughts and deeds you are doing a great service to those who suffer while waiting for organs and those who are recovering from receiving them, never mind the caregivers and others who are so critical to the donation/transplantation process. Words cannot express my fondness for all of you and my gratitude for your involvement. All I can say is, thank you from the bottom of my donor’s heart.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.